Meetings
Meetings are held monthly. In many of the meetings a guest speaker discusses topics of interest to people who have Parkinson's disease.
Click on the Meetings link above for more information.
Newsletter
A CPWG newsletter is published approximately every two months providing a variety of information. Articles have included what's new in medicine and therapies to interviews of Professionals and CPWG members. The newsletter has something for everyone as shown by a circulation of more than 400.
Click on the Newsletter link above for more information.
Care Partners
Care Partners are welcomed and encouraged to participate in discussions and interactions that occur as part of the regular monthly CPWG meetings. At a point during most presentations, even when the meeting’s focus is an “open mike” style discussion of topics suggested by the general group, Care Partners are invited to move to a nearby space for a “breakout session” just for them.
There is no formal facilitator, but members are encouraged to share experiences, concerns, successes, and resources.
To be included in a Care Partner email list used solely for messages related to CPWG meetings and events, or for any other information about Care Partners, please contact our Care Partner representative on the Board of Directors, marlynn.block@cpwg.org
CPWG Golf Program
The CPWG Golf Program completed its sixth golf season this fall. This group plays regularly at Portland West Golf Course in Portland, CT. There are 14 members of CPWG golf, not everyone can make it every week, but usually two golfing groups can be organized and play. The group focuses on play during the week, but this upcoming year CPWG is looking to also include some weekend play as an option. The common round of golf for CPWG is nine holes. The players includes golfers (both men and women are welcome) of differing abilities and differing levels of Parkinson’s.
We look for people with a love of the game of golf and a desire to share some camaraderie with fellow Parkinsonians. If you have an interest in this activity, please contact
- Tom Sullivan at tom.sullivan@cpwg.org or
- Jeff Lincoln at jeff.lincoln@cpwg.org
Informal Breakfasts
CPWG is once again inviting anyone diagnosed with PD, caregivers, friends, family, and anyone interested in Parkinsons to come to our monthly breakfasts for some good conversation. There is no agenda, only the sharing of ideas through good conversations. Breakfast can be ordered off the regular menu and each person will be responsible for his or her own costs. Its an opportunity to socialize, discuss, share ideas, ask questions.
Save the date! Tuesday March 2, 2010. Breakfast will be served – for anyone who would like to come. We will meet and eat at the Shoreline Diner and Vegetarian Enclave located at 345 Boston Post Road in Guilford (exit 59 from Rte I-95). Come about 9 a.m. and we’ll have a cup of hot coffee waiting for you. In order to give the diner a guesstimate on how many to expect, please contact Jeff Lincoln at (203) 453-3383 / jeff.lincoln@cpwg.org and let him know that you hope to be there.
Weather: We laugh at the weather gods, with a hardy HA, HA! Seriously folks, look out your window and decide, or call Jeff.
A word about franchising: Guilford and Middletown do not have a lock on the CPWG breakfast market. We encourage you to plan one for your neighborhood. They are easy to do, fun to go to, and there is not the stress of an agenda, speakers, clean-up, and so on. If you would like some encouragement or to tell us you are hosting a breakfast, contact Tom or Pat Sullivan at (860) 343-8278 / tom.sullivan@cpwg.org / pat.sullivan@cpwg.org
Projects
The group has projects of different lengths and emphases that teams of members are involved in. These projects come about by personal initiative or, as is often the case with larger projects, as a suggestion from the Board of Directors. Some past and current larger projects are:
- Forum on Clinical Trials - held on 3 March 2007
- Placing an information resource binder in significant medical professional’s offices as a source book for newly diagnosed people, and others who have an interest in PD. An ongoing project.
- Meeting with small (10-40) groups of health care professionals to help them understand the special problems of PWP and how they can help solve some of them when such a person comes under their care. Ongoing since 2002: we have met with several VNA groups, hospital staff and doctors, as well as medical students.
Other Activities
- Compilation of a PD library for use by members.
- Holding workshops at meetings with themes such as fitness and PD, dietary concerns, accessing information.
- Organizing information sessions for recently diagnosed people to give them support and resources that will help them through the first months and years with PD.
- Collaborating with research institutions and drug companies in their search for participants in clinical trials.
- Making presentations to the medical community (doctors, nurses, and other healthcare professionals) about how they can help better for the PWP who come under their care. We visit hospitals, the VNA, recovery facilities, etc ...